More Doctors Advocate Long-term Management of Celiac Disease

Jefferson Adams

Jefferson Adams is a freelance writer living in San Francisco. His poems, essays and photographs have appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate among others.

He is a member of both the National Writers Union, the International Federation of Journalists, and covers San Francisco Health News for Examiner.com.

Celiac.com 01/03/2009 - The development of reliable blood tests for celiac disease have shown the condition to be much more common than previously thought. In fact, the rate of diagnosis has increased sharply in recent years.

It’s been well documented that, for most people celiac disease, a gluten-free diet leads to healing of the small intestine, and brings about overall improvements in their quality of life. Current medical wisdom dictates that once a person is diagnosed with celiac disease and experiences an improvement in symptoms by adopting a gluten-free diet, there is little need to undergo follow-up screening unless they experience a clear recurrence of symptoms.

Some doctors are beginning to challenge that practice. However, it is also becoming clear that people with celiac disease face a higher risk of risk of developing a number of long-term complications and other autoimmune disorders.

The list of such complications and conditions associated with celiac disease is growing rapidly, in particular, autoimmune disease, malignancy, and bone disease. Can these be prevented and outcomes improved? Risk factors that can predict or shape long-term outcomes include genetic make-up, environmental factors, especially gluten consumption and exposure, persistent small intestinal inflammation⁄ damage and nutritional deficiencies.

The use of genotyping has yet to establish a clinical role in the long-term management of duodenalbiopsy. Symptoms, blood tests, or other non-invasive methods are poor predictors of healing status, or the likelihood of associated complications. This means that long-term management of celiac care might benefit from strategies laying somewhere between regular biopsies for life and simple faith that one is successfully following a gluten-free diet.

A team of doctors based in Australia recently set out to conduct a systematic review of the complications and associations of celiac disease, to identify potential risk factors, to define ways of assessing risk factors and to provide a strategy for management. The team was made up of Dr. M. L. Haines, Dr. R. P. Anderson & Dr. P. R. Gibson, and they conducted a review of medical literature going back to 1975.

The doctors found that all people with celiac disease should have follow-up exams. They felt a reasonable minimum for all patients would be an initial consultation 1–2 weeks after biopsy diagnosis, review consultation 3–6 months later and subsequent annual reviews assessed on an individual basis.

As to whether the follow-up should be done by a specialist, such as a gastroenterologist, or by a general practitioner, a nurse practitioner, or a dietitian, the research team noted that most celiac patients prefer to see a dietitian for follow-up, with a doctor available as needed.

The team felt that special attention should be paid to patient adherence to a gluten free diet.

The doctors noted the ease of gluten ingestion and pointed out that 6 in 10 patients experience persistent histological changes within an average of two years of undetected gluten exposure. They also noted there are a large number of associated conditions that can be averted by keeping celiac disease under control. They also note that symptoms and blood tests are poor indicators of intestinal damage levels on a cellular level.

Such damage can spread from the cellular level to the systemic level over time, leaving people with untreated celiac disease face an elevated risk of developing infection. The researchers noted that people untreated celiac disease have significantly reduced levels of leucocytes, total lymphocytes, and CD3+, CD4+ and CD8+ lymphocytes compared to those with treated celiac disease and to the general population.

With so many associated conditions tied to celiac-related intestinal damage, controlling or preventing that damage becomes crucial. They also note that proper monitoring of celiac disease can help to prevent celiac-associated neuro-psychiatric conditions such as anxiety, headaches, behavioral symptoms and depression, which, it is thought may be triggered by impaired availability of tryptophan and disturbances in central serotonergic function.

The proper control of celiac disease can help to prevent the development of, or improve, numerous celiac-associated conditions. That proper control means a reliable means to assess patients for follow-up, and the study presents several aspects of a new protocol for treating celiac disease over the course of the patient’s lifetime.

4 Responses:

Unfortunately it seems rather muddled. Who's the issue here? People with undiagnosed or untreated Celiac? People with Celiac that are 'cheating' or not adhering to a Gluten Free diet?

This article seems to raise a lot of red flags without providing any clear course of action. What's to be done? Is the recommendation for diagnosed Celiacs to visit their doctor (or other medical/nutritional professional) once a year? Then what? According to the article, blood tests are unreliable. Biopsies are a little extreme, so annual biopsies are out too. So then what? 'Yes doctor, I am still not eating anything with wheat (or related grains, etc.) and I avoid food products that are questionable or have unclear ingredients or manufacturing processes. Thanks. See you next year.'

Bottom line is that there seems to be nothing substantial to take away from this article.

I agree with post #1. This might be cautionary for those that cheat themselves by eating gluten. This article raises more questions than answers for those adhering to their diet. I'm recently diagnosed ONLY because I took it upon myself to get educated and adhere to a gluten-free diet, not because any doctor EVER suspected that any previous diagnoses or unresolved issues were linked to Celiac Disease, Gluten Ataxia or Dermatitis Herpetiformis. It doesn't address anything for those of us that were most likely gluten intolerant our entire lives, survived a myriad of strange symptoms and FINALLY got diagnosed as middle-aged adults. Cancer? been there done that. Chronic, intractable anemia? Neurological and cognitive deficits? Thyroid Dysfunction? Obesity that doesn't respond to dietary changes and exercise? Pre-Diabetes? DONE ALL THAT! When I took charge and voluntarily eliminated gluten, they all disappeared. Unfortunately, once gluten is eliminated, blood tests for anitbodies and biopsies are moot.

I am hoping to find more clear answers to the new discovery of celiac disease. After living with migraine headaches for more than 40 years, I had to self-diagnose in order to help my endocrinologist begin to ask me the 'right' questions. Very frustrating to not know where to go from here other than follow a gluten-free diet. In reading the article, I am unclear about what should be biopsied, or how this disease is followed up.